How many
times did you walk into a public loo after someone and couldn't stand the smell?
How many times did you curse or call someone names because s/he was occupying
the toilet for too long? Has the thought of them having a serious chronic
disease ever crossed your mind? I bet it didn’t. You have never probably
noticed how embarrassed and ashamed they were walking out and seeing someone
entering the toilet after them, or perhaps seeing the massive queue of people
that has just gathered around giving them the worst look ever.
People
often say that they could never poo in a public toilet. I get it, the
uncomfortable feeling of other people ‘hearing’ you, judging you and giving you
looks. I never liked to do it myself but sometimes when I’m out of the house I
have no choice. I suffer from a chronic disease called Ulcerative Colitis,
which together with Crohn’s Disease is part of the Inflammatory Bowel Diseases
(IBD). What it means is that at one point of my life, when I was 21 to be
exact, my large bowel started attacking itself, thinking there was an infection
whereas there wasn't really one. Following this it started attacking healthy
tissues causing inflammation and exposing me to heavy diarrhoea with blood and
mucus. One day I was fine, the next I couldn’t get out of bed. I was weak,
exhausted, couldn’t eat nor drink anything as it just passed through me.
Everything seemed to irritate my sensitive insides, although I had no clue
about it at that time. I simply thought it was a bug that was going to go away
after a week or so, but it didn’t. What triggered it for me was stress due to
the amount of exams and written assignments I had to undertake at my year
abroad university, and probably the fact that they were all in French. I didn’t go to the doctor in France even
though my friends were trying to force me to. I guess I already knew that it was
something serious and I didn’t want to stay alone in France for Christmas. So I
went back to Poland, where I am originally from, and my parents took me
straight to the GP who completely neglected me. Then there was the hospital
where I was referred to go to an outpatient clinic. My dad got very frustrated
and decided not to go there but instead made a private appointment with our old
GP who suspected either IBS or IBD but wanted me to see a specialist for
further tests. The only problem was the fact that it was 24th
December, Christmas Eve, and we had to wait until 6th January for
the specialist appointment. So with some dietary recommendations, some
medications and pain killers I was able to survive Christmas and New Year’s
Eve. Luckily my family was there for me. Although very caring and supportive,
they drove me nuts treating me like I was an egg just about to crack. When I
finally got the appointment with the specialist, his first question was how
much weight did I lose, followed by when can I come to the hospital. I lost
more than 5kg which doesn’t sound that much but for someone only 5’1” (155cm)
tall and usually weighing around 50kg it was quite noticeable. After having a
colonoscopy done the gastroenterology team discovered I suffered from severe Ulcerative
Pancolitis which is a form of Ulcerative Colitis in which the whole colon (from
the cecum to the rectum) is affected by the disease. Unfortunately (or
fortunately) the extremely high dosage of corticosteroids that I was given,
helped and the plans of trying biological treatment on me weren’t an option
anymore. I’ve had my ups and downs ever since, some more painful and severe
than others but luckily I didn’t require any further hospitalisation (and I
hope it stays that way). Despite that I suffer from side symptoms which affect
my life on a daily basis such as recurrent flare-ups, abdominal pain, weight
loss and weight gain (due to corticosteroids), and extreme fatigue. I may be
fine in the morning but in agony few hours later. The disease is completely
unexpected. Moreover, I need to watch out what I eat and avoid certain foods
that I know for sure will make me suffer later. I need to watch out for stress
so that it won’t trigger a flare up.
#BeCrohnsAndColitisAware